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Data Reuse Agreements
(DRA)
Jean Stanford
Arnon Rosenthal, PhD
Peter Mork, PhD
MIP 2010
Approved for Public Release
© 2011 The MITRE Corporation. All rights reserved
Problem
 The Office of the National Coordinator for Health Care IT
(ONC) is spending roughly $20 billion* to encourage
hospitals and providers to adopt electronic health records
(EHRs).
– To get funded, they must be able to demonstrate
interoperable data exchange with other providers while
respecting patient privacy policies
– There is no electronic means to manage patient privacy
policies, access them in real time or alert patients that
their records are being requested
– It’s still on paper.
*HITECH Fact Sheet at http://www.himss.org/content/files/12_04_09_ARRAHITECHHIE_FactSheet.pdf
© 2011 The MITRE Corporation. All rights reserved
Background
Example: Sgt. Bob has records at the VA and DoD health care
facilities and with private sector pharmacies & physicians.
Consent forms are needed to share data across these systems.
VAVA
DoDDoD
© 2011 The MITRE Corporation. All rights reserved
Objective
 Provide the framework for meaningful, granular, expression
of patient consents
– Provide a user interface for patients and providers to
access at their convenience, through a browser or mobile
device
– Provide nationwide patient consent capture and
management
 Provide nationwide provider record request capability
 Request for specific patient record
 Determination of fit with patient consent
 Provide a patient-viewable log of consent requests and
recommended disposition
© 2011 The MITRE Corporation. All rights reserved
Activities
 Developed use cases
 Conducted literature review
 Developed operations concept
 Developed user interface
 Integrated with ESP program to provide the policy reasoning
and enforcement facility needed to implement the consent
policies
© 2011 The MITRE Corporation. All rights reserved
Conceptual Architecture
Request ServerRequest Server
(e.g., hData)(e.g., hData)
Request ServerRequest Server
(e.g., hData)(e.g., hData)
Record Holder ServerRecord Holder ServerRecord Holder ServerRecord Holder Server
EHREHREHREHR
BrowserBrowserBrowserBrowser
Consent ServerConsent ServerConsent ServerConsent Server
ConsentConsent
DBDB
ConsentConsent
DBDB
PolicyPolicy
ReasonerReasoner
PolicyPolicy
ReasonerReasoner
PolicyPolicy
EnforcerEnforcer
PolicyPolicy
EnforcerEnforcer
VAVA
© 2011 The MITRE Corporation. All rights reserved
Consent Server User Interface
7
© 2011 The MITRE Corporation. All rights reserved
Impacts
 Sponsor Presentations:
– Office of the National Coordinator
– Substance Abuse and Mental Health Services
Administration
– Department of Veterans Affairs
 Other Discussions:
– Healthcare Information and Management Systems Society
– GE Healthcare
– United HealthCare
 Open Source:
– https://sourceforge.net/projects/kaironconsents/
© 2011 The MITRE Corporation. All rights reserved
Future Plans
Policy MaturityAccepted Practices Inchoate
TechnicalComplexity
LowHigh
Preemptory
Access
Patient Review
& Approve
Integrate with
State Mandates
Intelligent
Redaction
Credential
Matching
Eliciting Patient
Preferences
Automated
Enforcement
Implemented
Grand
Challenges
Under
Development
Integrate Care
Relationships
Audit
© 2011 The MITRE Corporation. All rights reserved
Future Plans
Policy MaturityAccepted Practices Inchoate
TechnicalComplexity
LowHigh
Preemptory
Access
Patient Review
& Approve
Integrate with
State Mandates
Intelligent
Redaction
Credential
Matching
Eliciting Patient
Preferences
Automated
Enforcement
Implemented
Grand
Challenges
Under
Development
Integrate Care
Relationships
Audit

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Data Reuse Agreements and Consent Management

  • 1. Data Reuse Agreements (DRA) Jean Stanford Arnon Rosenthal, PhD Peter Mork, PhD MIP 2010 Approved for Public Release
  • 2. © 2011 The MITRE Corporation. All rights reserved Problem  The Office of the National Coordinator for Health Care IT (ONC) is spending roughly $20 billion* to encourage hospitals and providers to adopt electronic health records (EHRs). – To get funded, they must be able to demonstrate interoperable data exchange with other providers while respecting patient privacy policies – There is no electronic means to manage patient privacy policies, access them in real time or alert patients that their records are being requested – It’s still on paper. *HITECH Fact Sheet at http://www.himss.org/content/files/12_04_09_ARRAHITECHHIE_FactSheet.pdf
  • 3. © 2011 The MITRE Corporation. All rights reserved Background Example: Sgt. Bob has records at the VA and DoD health care facilities and with private sector pharmacies & physicians. Consent forms are needed to share data across these systems. VAVA DoDDoD
  • 4. © 2011 The MITRE Corporation. All rights reserved Objective  Provide the framework for meaningful, granular, expression of patient consents – Provide a user interface for patients and providers to access at their convenience, through a browser or mobile device – Provide nationwide patient consent capture and management  Provide nationwide provider record request capability  Request for specific patient record  Determination of fit with patient consent  Provide a patient-viewable log of consent requests and recommended disposition
  • 5. © 2011 The MITRE Corporation. All rights reserved Activities  Developed use cases  Conducted literature review  Developed operations concept  Developed user interface  Integrated with ESP program to provide the policy reasoning and enforcement facility needed to implement the consent policies
  • 6. © 2011 The MITRE Corporation. All rights reserved Conceptual Architecture Request ServerRequest Server (e.g., hData)(e.g., hData) Request ServerRequest Server (e.g., hData)(e.g., hData) Record Holder ServerRecord Holder ServerRecord Holder ServerRecord Holder Server EHREHREHREHR BrowserBrowserBrowserBrowser Consent ServerConsent ServerConsent ServerConsent Server ConsentConsent DBDB ConsentConsent DBDB PolicyPolicy ReasonerReasoner PolicyPolicy ReasonerReasoner PolicyPolicy EnforcerEnforcer PolicyPolicy EnforcerEnforcer VAVA
  • 7. © 2011 The MITRE Corporation. All rights reserved Consent Server User Interface 7
  • 8. © 2011 The MITRE Corporation. All rights reserved Impacts  Sponsor Presentations: – Office of the National Coordinator – Substance Abuse and Mental Health Services Administration – Department of Veterans Affairs  Other Discussions: – Healthcare Information and Management Systems Society – GE Healthcare – United HealthCare  Open Source: – https://sourceforge.net/projects/kaironconsents/
  • 9. © 2011 The MITRE Corporation. All rights reserved Future Plans Policy MaturityAccepted Practices Inchoate TechnicalComplexity LowHigh Preemptory Access Patient Review & Approve Integrate with State Mandates Intelligent Redaction Credential Matching Eliciting Patient Preferences Automated Enforcement Implemented Grand Challenges Under Development Integrate Care Relationships Audit
  • 10. © 2011 The MITRE Corporation. All rights reserved Future Plans Policy MaturityAccepted Practices Inchoate TechnicalComplexity LowHigh Preemptory Access Patient Review & Approve Integrate with State Mandates Intelligent Redaction Credential Matching Eliciting Patient Preferences Automated Enforcement Implemented Grand Challenges Under Development Integrate Care Relationships Audit

Editor's Notes

  1. This is to inform you that MITRE has obtained public release approval for the information identified below. Title: Data Reuse Agreements (DRA) Date of Release: 4/19/2011 Case Number: 11-1630
  2. Slide 1. Problem (text slide): Describe the problem area that your project is addressing. Use a single short narrative statement or just a few bulleted statements. This is also the place to describe what is not known – the open question that needs resolving. This slide will become one element of the take-away quad chart, so write at that level. Please just use text on this slide.
  3. Slide 2. Background (graphic with captions slide): This slide provides the background and context that motivate your work. It can be used to show the business context of your project. Provide an interesting graphic(s) with brief text captions that you can describe to illustrate the points. Please stay within the dotted box shown on the template.
  4. Slide 3. Objective (text slide): State the objective of the project as you would on a quad chart. Use a single short narrative statement or just a couple of bulleted statements. If this is a multiyear effort with an overall objective, also state as a separate bullet the specific objective for the current fiscal year. Please just use text on this slide.
  5. Slide 4. Activities (text slide): Provide a bulleted list of the high-level activities underway on your project. This should be the kind of summary information that you would include on a quad chart. Please just use text on this slide.
  6. Slide 5. Highlight (graphic with captions slide): Use (an) interesting graphic(s) with brief text captions to illustrate a significant activity or result of the project. This is your opportunity to provide more detail on some aspect of your project in an engaging way. Please stay within the dotted box shown on the template.
  7. The main screen of the user interface shows that Bob has established consents that govern four different scenarios: treatment provided by his primary care provider (or PCP), treatment provided via a referral, research and emergency-care. If we click on the first entry [not shown here], we see that Dr. Blass (Bob’s PCP) can receive any information. If we click on the second entry, we see that Bob allows Allergy information to be shared, but not medications. We can change the medications from deny to allow. Bob does not want mental-health information to be shared. Finally, this consent allows information to be shared with Dr. Blass (Bob’s PCP) or anyone that Dr. Blass indicates he has referred Bob to. If we click on the fourth entry, we see that when Bob receives emergency care, he is willing to share any information, except that which pertains to mental health. [Click on the last iPhone to return to the slide show.]
  8. Slide 7. Impacts (text slide): Provide a bulleted list of the high-level impacts your project is having (or intends to have if you are just starting). Please just use text on this slide. A project can have multiple impacts. Here are examples as listed in the Project Leader Handbook: Customer operational mission Developing work program Academic/R&D community Standards body that influences customer decisions/choices Vendor community MITRE operations, image, and environment Relevant knowledge capture and dissemination
  9. Slide 8. Future Plans (graphic with captions slide): Use (an) interesting graphic(s) with brief text captions to illustrate where your project is going next – what the next challenges are. This could be the next milestone along the way of a multiyear effort, a proposed technology transition, or new related research that is needed if your project is drawing to a close. Please stay within the dotted box shown on the template.